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News from Scandinavia

Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.

  1. Kalliope

    Kalliope Established Member (Voting Rights)

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    Thought it might be useful to have a thread on news from Scandinavia. Hopefully it can become an archive and useful as a reference in future.

    Starting with the kickoff of one of the four research projects which recently got funded in cooperation with ME-patients by the Research Council of Norway; Tjenesten og MEg (The health service and I).

    SINTEF and Fafo (both independent research organisations) collaborate on a research project on ME-patients and their meeting with the health service. SINTEF has previously written three very thorough reports on the lack of care for ME-patients.

    They are planning on making qualitative interviews with ME-patients and a big survey.
    They have a Facebookpage and a website for those who want to follow them.

    Last month they invited to an open meeting to introduce their project and to discuss and receive inputs from patients, carers and others. The meeting was streamed and later uploaded on YouTube.



    It was a very successful meeting, with an open and respectful dialogue and with incredibly powerful and insightful input from the audience.

    I followed the meeting on streaming, and my impression was that the researchers present were thorough, humble, genuinely interested and listened to what was said.

    Am excited about the project and looking forward to read it when finished. Hopefully in 2019.
     
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  2. Kalliope

    Kalliope Established Member (Voting Rights)

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    Research Conference in Oslo 20 - 21. November 2017

    The Norwegian ME Association is preparing a research conference in cooperation with Oslo university Hospital and the Norwegian Institute of public Health. The first day is for researchers only, primarily from Scandinavia. The second day has an open program and will contain lectures from among others Olav Mella, Mady Hornig and Ron Davis.

    Later that day the ME Association will celebrate their 30 year anniversary with a concert and a screening of Unrest.

    Not sure yet whether any of the conference will be streamed.
     
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  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Hi Kalliope - how about starting a new thread specifically for this event, and adding it to the calendar:

    https://www.s4me.info/index.php?threads/how-to-add-a-thread-to-the-calendar.536/
     
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  4. Kalliope

    Kalliope Established Member (Voting Rights)

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    Good idea, @Sasha The original plan was to add to calendar from the post, but seems a thread is required. Am a newbie and still figuring these new forum features out :confused: I think the calendar is a great attribute and will become very useful.
     
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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    Yes, I'm learning too and I think the calendar is brilliant!
     
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  6. Kalliope

    Kalliope Established Member (Voting Rights)

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    Lecture on ME from ergonomist Ewa Wadhagen-Wedlund from the ME ward at Stora Sköndal outside Stockholm.
    In Swedish.

     
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  7. Kalliope

    Kalliope Established Member (Voting Rights)

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    Seminar over 2 days about ME in February 2018, Norway.

    Programme looks very good! If you know of any Norwegian doctors who might be interested, please send them an invitation.

    Klinisk emnekurs om CFS/ME for leger
     
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  8. Kalliope

    Kalliope Established Member (Voting Rights)

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  9. Kalliope

    Kalliope Established Member (Voting Rights)

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  10. Valentijn

    Valentijn Moderator Staff Member

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    Seems like a pretty reasonable critique. Though this bit suggests he's not particularly familiar with what ME/CFS is or isn't:
    But I don't expect most people to know that chronic fatigue isn't a typical symptom in ME/CFS either :p
     
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  11. Hip

    Hip Established Member (Voting Rights)

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    Chronic fatigue isn't a typical symptom in ME/CFS?!

    Chronic fatigue or relapsing fatigue is a required symptom for the diagnosis of ME/CFS:

    The CCC says to have ME/CFS, the patient must have: "a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level".

    The CDC Fukuda 1994 criteria says the patient must have: "Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reducation in previous levels of occupational, educational, social, or personal activities."
     
  12. Kalliope

    Kalliope Established Member (Voting Rights)

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    A senior doctor writes in favour of better public medical insurance for ME-patients in Journal of the Swedish medical Association.

    Kroniskt trötthetssyndrom - ett omöjligt läkaruppdrag?
    Google translation: Chronic Fatigue Syndrome - An Impossible Medical Mission?

    Rejection of medical certificates causes the patient to deteriorate and focuses on supplementation rather than on medical issues. It is not uncommon for the message to come after a few months, even when the sick leave period expired and a new certificate has been submitted. Patients with initiated rehabilitation must then concentrate on appeal.

    I
    t is quite sympathetic, but unfortunately she refers to GET and CBT as somewhat effective, based on the Cochrane review of Larun/Brurberg/Odegaard-Jensen
     
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  13. Valentijn

    Valentijn Moderator Staff Member

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    No more than in most diseases, I'd say. It's certainly not a central or important symptom. At most it's a starting point in the diagnostic process due to a general failure of doctors (or new patients) to recognize PEM.
     
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  14. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    When you put it like that, I'm so much closer to agreeing with you but it is central and important for a proportion.
     
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  15. Hip

    Hip Established Member (Voting Rights)

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    A few years ago when my ME/CFS was approaching the severe level, I'd often have so much shattering fatigue that I'd be in the bed not only during the night, but also much of the day, often drifting in and out of sleep during the day, and feeling so deeply tired that it felt like I was on my deathbed and about to expire there and then (which actually was a pleasant thought for me, given the sheer misery of some my comorbid neuropsychological symptoms).

    I am not sure if there are too many other diseases that present with that kind of fatigue on a long term basis.

    These days my ME/CFS is moderate, approaching mild, and it is now rare that that I feel tired enough to need to sleep during the day, except for a short "siesta" nap. However, I still feel an overall presence of fatigue.



    In any case, I think Dr Yngve Thomas Bliksrud's point that you quoted above, namely that:
    is a very good point, and does suggest that the pyruvate dehydrogenase impairment that Fluge and Mella found may be a consequence of ME/CFS and its energy metabolism dysfunction, rather than the cause of that dysfunction. I started a new thread on this issue here.
     
  16. Trails

    Trails Established Member

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    Apropos of nothing, just wanted to let you know @Hip, that is great to see you here :)
     
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  17. Sasha

    Sasha Senior Member (Voting Rights)

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    I'm very surprised by this. Are you basing this on data?

    It is for me.
     
  18. Valentijn

    Valentijn Moderator Staff Member

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    Pretty sure I've seen fatigue specifically mentioned somewhere as being an extremely common symptom in very many illnesses. Wikipedia says "Medically, fatigue is a non-specific symptom, which means that it has many possible causes and accompanies many different conditions." It's also listed as a normal result of disease, and even has a impressive list of conditions involving chronic fatigue at https://en.wikipedia.org/wiki/Fatigue_(medical)#Causes

    PDH deficiency certainly includes lethargy (80%-100% of patients), which is one manifestation of fatigue. Presumably the doctor is aware of that, since it's his area, so his statement suggests that he thinks ME/CFS is somehow only fatigue, or primarily fatigue.
     
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  19. Mij

    Mij Senior Member (Voting Rights)

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    Fatigue is not an essential factor in M.E. according to Dr.Hyde.

    He describes it as a rapid CNS and muscular fatigability with a pathologically slow recovery or loss of stamina.

    I did not have fatigue for many years after the onset. I do now but I think it's mainly because my immune system is always 'on'.

    Something changed along the way.
     
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  20. Sasha

    Sasha Senior Member (Voting Rights)

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    I misunderstood you - I thought that by agreeing with @Hip that fatigue wasn't a 'typical' symptom of ME/CFS, you thought it wasn't a common symptom.

    I'd also say, though, that the severity of the fatigue in ME/CFS - to the point where people can't get out of bed, or even turn over in bed - makes it a key symptom. I don't have the impression that fatigue in other diseases is as disabling (perhaps I'm wrong, though).
     
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